Long term side effects of Listeria Meningitis and the DWP

Not quite sure how to word this.

I had meningitis in 2005. Initially suffered total memory loss, spent 10 weeks in hospital, had to learn to walk/breath etc again. And couldn't and still cannot remember a lot of things. I, for this day cannot remember the affection for the girlfriend I had at the time, nor what we did together, I cannot remember much about university other than that I attended, and a few very vague what I 'think are memories' And I only have memories from pictures I've seen since, not actual visual memories of actions, scents/smells that I could recall. I had a 2 minute heart attack.

It still affects me under moments of stress, I was never given any rehabilitation from the hospital (only care from my parents who found out about the Meningitis Trust (Meningits Now) via a local shopkeeper.

I have lifelong kidney failure (from the age of 5) DWP are claiming the meningitis no longer affects me as I am not seeing a specialist for it.

I stopped driving and being confident in many things after the meningitis. My personality changed. I lost interest in many things I previously loved, and focused on different aspects of life.

I was planning a life of sorts with my partner and that was all lost, and if that doesn't affect a man mentally I'm not sure what does.

Without some sort of formal document I feel they will still ignore the lifelong effects of my trauma.

I'm getting help with my PIP appeal, but I just wanted to share this with you. If anyone has any ideas. I last saw a meningitis specific counsellor some years ago (and I'm getting more counselling therapy at the moment).

When I'm stable, I can get on with life to some degree, despite treatment every other day, but when something like this comes along I can't cope!

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9 Replies

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  • The best source of assistance with various DWP forms is the independent organisation "Benefits and Work". There is a modest annual subscription (under £20 but there are often offers to teduce this.

  • Yes, I have used them for some time

    It does seem together with ATOS, pip is designed to remove people's mobilty and independence in life

  • Hello, I was hospitalised for circa 12 weeks in 2008 with TB meningitis. I was fortunate enough to be referred to a psychologist after discharge from hospital. I had a neuro-psychological assessment which identified the area of the brain affected and the areas that I was deficient in.

    I contacted the hospital again a few years later for a follow up assessment to see if I had made any progress. Whilst I hadn't made much improvement it did provide a more recent report that I could provide to DWP for my PIP application.

    I would recommend you seek a referral so that you can have a full psychological assessment so that you can submit it for your OIO application. Good luck buddy

    Paul

  • Thanks. I'm getting counselling now.. I've thought of a referral back to the hospital. When I was discharged I was never given or offered any support apart from a letter 6 months later from the ICU department. Promised rehab was a myth , my parents who were doing most of the rehab work were told 'see the GP'

    We were so overwhelmed with the saga no one had the energy to follow up and the discharge letter to the GP was either never sent or got lost. My GP didn't know I'd spent 10 weeks in hospital with meningitis!

  • Well something I've recently done was requested my personal patient records covering the period I was admitted until the present day.

    Although they should supply an encryption sheet to decode the hand writing, it nevertheless gave me more insight as to what was happening during the summer of 2008 when I was in hospital

  • Thanks , that's an ideal

  • Thanks, part of my counselling session yesterday was an assement so I'm hoping I can use a copy of that

  • I recommend you include anything that supports your case. I asked anybody that I saw related to my condition to write a supporting letter. I literally bombarded them with evidence even if it was a few years old!

  • This is exactly what I've been doing.

    My condition hasn't improved in any way, and is lifelong. They seem to be dismissing any historical data as matter of course...

    I have stacks of 'extra info, numbered and referenced,' I think they just haven't included them in the assessment. Or pretended to misinterpret etc etc!

    I can't fill in these forms on my own anyway, I get family and a charity advocate to help with the case.

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